Tuesday, November 6, 2012

Different different children

"C" at school

Here's a quote from Andrew Solomon, author of the new book "Far From the Tree: Parents, Children and the Search for Identity," published this month by Scribner. It appears in an article he wrote for the New York Times Magazine, called "How Do You Raise a Prodigy?" (Solomon is also mentioned in this lovely article about raising children with differences by Jane E. Brody.)

"Having spent 10 years researching a book about children whose experiences differ radically from those of their parents and the world around them, I found that stigmatized differences — having Down syndrome, autism or deafness; being a dwarf or being transgender — are often clouds with silver linings. Families grappling with these apparent problems may find profound meaning, even beauty, in them."

It just can't be over-emphasized how utterly different children with profound disabilities are from other "different children". The clouds they bring sport no silver, not in their linings, not anywhere.

And yet, often our hope for a cure or improvement endures. No amount of reason or evidence to the contrary can eradicate it.

I am realistic, maybe to a fault, about C.'s disabilities and prognosis. I can even joke with my family about her condition to ease our pain.

Nevertheless, I still fantasize about one day bringing C., walking and talking, to visit all those neurologists who wrote her off just to watch their jaws drop. At times, I see us regaling Oprah and her audience with details of "the miracle" - along with a few before and after photos of C.

Wheelchair update:

Week 3 and the footrest is still "being fixed", according to the teacher. So today we brought C. to school in our own wheelchair. My husband
bounced it down the 24 stairs and then carried C. down separately in his arms.
Then we "walked" her up the stairs and shlepped the wheelchair up separately
again.

I give her so much support up the stairs I'm not sure she's technically
"walking". But it's easier that full- fledged carrying.

No comments:

About my blog

C. is the youngest of our children. She suffers from severe epilepsy, blindness, microcephaly and profound cognitive and physical impairment.

We have faced hurdles and gained insights through our encounters with the medical, educational and governmental establishments.

Nobody was there to help or guide us.

I would love to spare parents in the same predicament some of the painful mistakes and wasted efforts we have made.

I am also eager to promote greater acceptance, inclusion and appreciation of our children. The new, heightened awareness of people with disabilities tends to gloss over our children - the ones with profound disabilities. They are a forgotten minority within this minority. Still marginalized and even shunned by many "enlightened" societies, they are a long way off from achieving equal rights.